MCAS Perspectives - Personal and Professional | Office Hours

[00:43] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. Today we are going to do another episode where you guys are my guest. I'm going to periodically be doing these solo episodes, so be sure to submit your questions. You can visit bendybodiespodcast.com to submit your question. Please also visit the Bendy Bodies Podcast to sign up for the Bendy Bulletin. We recently started releasing these newsletters and we would love your feedback on that also. Be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Let's get started.
[01:26] I want to start by reading a review from Sarah G., DPT, and she commented: "As a doctor of physical therapy, I enjoyed listening to this informative podcast for all sorts of hypermobility-related topics. I am a hypermobile individual with multiple autoimmune disorders, and I specialize in treating hypermobility and EDS. It's great to hear current research from MDs who are leaders in the field. I also enjoy the dance-related episodes as I treat many aerialists. Thank you for providing this high-quality, evidence-based content."
[01:56] I just wanted to say thank you so much to Sarah for this kind and helpful 5-star review. Please keep the feedback coming. It is so helpful for us to know what you're liking and what you're not liking. So please let us know whether it's positive, negative, or a mix. We really want to hear from you.
[02:19] Before I started my first podcast, I thought podcasting was so easy because I would hear people talking and it seemed like they were just hanging out and chatting casually. But like with most things in life, once you do it, you realize that it is so much more work than you think it's going to be. Your feedback is what really makes it all the more worthwhile. So thank you so much for your feedback, and please do keep it coming.
[02:44] Next, we're going to address a question from one of the listeners: "Hi, Dr. Bluestein. First, thank you so much for creating the Bendy Bodies Podcast. I found the podcast a while ago and have found many of the episodes to be incredibly informative and helpful. A question, maybe for your next solo episode, which happened to be timed quite appropriately. I am 37 and have, like many others, experienced tons of medical gaslighting in my journey to get a diagnosis and trying to heal and improve my quality of life from what I have always thought was the trifecta of hypermobile EDS, mast cell activation syndrome, and POTS, or postural orthostatic tachycardia syndrome. I know everyone's experience is different. But for me, the root cause of all my issues, including hypermobility, actually seems to be mast cell activation syndrome. But it wasn't until this year, 10 years after I started experiencing debilitating symptoms — though I have had symptoms in one form or another my entire life — that I discovered that MCAS is likely the root cause for me. Now that I'm working with a doctor who specializes in MCAS and treating it appropriately, my quality of life is significantly improving. Are we doing a disservice to the hypermobile and hypermobile EDS community by not talking about MCAS and MCAS treatment more? If I had come across MCAS 10 years ago when I first started Googling my symptoms rather than hypermobile EDS, I think my path to getting well would have been much different and faster. Thanks so much, Jane."
[04:16] So I love this question and was excited to address it on the podcast because I feel like there are some different elements of this question that are really important. So I'm going to start with the end of her question about not talking about mast cell activation syndrome more.
[04:36] I think it's interesting to point out that nowadays we have so many different ways that we're getting our information. Back when I was in medical school and when I was in my residency training in anesthesiology, we didn't have these methods of learning. Now we have things like podcasts, of course. We have video platforms like YouTube. We have social media that includes a whole variety of things, including short-form video. We have blogs, we have vlogs, etc.
[05:04] These things are very helpful, but at the same time, it's very difficult to convey complex, nuanced topics when you're limited to a certain amount of space. You can't add links like on Instagram, and you're trying to also make the information appealing to the reader. There are many researchers and scientists who have no social media presence at all, so you won't find their information there. And we all have limited bandwidth, so we all choose how we spend it.
[05:34] I do spend a lot of my time doing this podcast and social media, and I want to thank my amazing team. But it truly does take a village when you're doing something like this, which also costs money. Because of the fact that I'm doing the podcast and I do so much on social media, I don't have time for as many other things like research, writing, seeing patients, etc.
[05:58] This is also challenging because the medical management of conditions doesn't reimburse anywhere near as well as when you are doing things like surgeries and procedures. It was actually quite interesting — there was a podcast guest very recently who literally said to us that they were going to be going into the OR that afternoon and needed to reschedule the time because they were going to be doing a procedure that pays the bills. So it's probably not known to a lot of people that if you are doing more of the medical management of things, and especially if you're taking care of people with complex conditions like hypermobile EDS, long COVID, ME/CFS, MCAS, etc., these are very time-consuming things. So you're often spending a lot of time relative to other people in a practice that might be seeing a variety of more acute and chronic problems.
[06:51] Also, we have lots of information about the connections between the different components of this trifecta — mast cell activation syndrome, POTS, and EDS — but we need much, much more data. I recently started a newsletter on Substack and would love for you to subscribe. It is much easier to share complex topics via something like a newsletter.
[07:14] Okay, so now let's address the other part of Jane's question: mast cell activation syndrome approaches. First, I just want to remind you what mast cells are. They are part of the immune system. They are immune cells that live in the tissues, and these cells are present where we interface with the environment. So they're present in the mucosa of our nose and our throat and our sinuses. They are present in the gastrointestinal tract, in the airways and the lungs. They are also present in the uterus and the vagina and the skin. So any place where we interface with the environment — and they are there to respond to external threats.
[07:55] Now, I want to share with you my evolution of understanding mast cell activation syndrome. I can remember when I first heard about mast cell activation syndrome. I was cooking pasta in my kitchen, and you might think, well, why in the heck would you remember specifically when you first learned about it? I had just met somebody who was starting a nonprofit for EDS in Wisconsin where I lived at that time, and she was explaining to me about mast cell activation syndrome and that most doctors knew about mastocytosis — which is when you have an increased number of mast cells — but that most doctors were not very familiar with mast cell activation syndrome, which is when there's a normal number of mast cells but they release more mediators and they degranulate more easily, so they're more sensitive to things in the environment.
[08:48] I remember her telling me this and telling me that it was just so much more common than what most people realized. During that year, 2017, I attended multiple conferences on EDS, and of course there was discussion about mast cell activation syndrome as well. That is also the same year that I opened my clinic.
[09:07] Shortly before I opened my clinic in 2017, I was giving a talk at the local YMCA and I was talking about chronic pain. There was a mom there who came up to me afterwards and asked me if I thought I could help her daughter. She proceeded to tell me about her daughter who was diagnosed with hypermobile EDS and was having all kinds of unusual symptoms, but the most worrisome one was that she was having symptoms of seizure-type activity. She had had quite an extensive workup and was ultimately diagnosed with a non-epileptiform seizure disorder.
[09:46] So the mom came up to me after this talk and asked me if I thought I could help her daughter. And I said, "I don't know." I honestly hadn't even opened my clinic yet. I said to the mom, "I don't know if I can help her or not, but I certainly am willing to try." They did end up scheduling an appointment, and this was the second patient that I ever saw in my practice, Wisconsin Integrative Pain Specialists, which I started in Wisconsin in 2017.
[10:13] As they were describing to me these episodes that this young lady had, I thought, I'm not exactly sure what could be causing this, but mast cells can do so many unusual things. Could this be related to mast cell activation syndrome? So I proceeded to prescribe her a number of different therapies that I had learned about for mast cell activation syndrome. And she came back for her 30-day follow-up, and I almost fell out of my chair. She said, "I have not had a single episode since I saw you 30 days ago." And I was shocked. I was like, "Wow, it actually worked?" I couldn't believe it. So that was my first case of really realizing how important mast cells are.
[10:57] Later, I was preparing for a conference in New York on mast cell activation syndrome. This was in 2022, so obviously quite a few years later, and I'd been treating a lot of patients during that time, many of whom either had suspected or diagnosed mast cell activation syndrome. When I was preparing for this conference, I was asked to give a presentation on pain and mast cells, and in the preparation of this lecture, I read lots and lots of journal articles and realized that mast cells are very heavily involved in the initiation and the maintenance of chronic pain.
[11:35] So ever since that 2022 Mast Cell Activation Syndrome conference where I did this presentation, I started changing the way I approached patients. And even if they seemed to be on the lower end of the mast cell activation spectrum — because I really feel like it's a spectrum; it is also a syndrome, but I feel like there's a significant spectrum — as I started treating more and more people using these mast cell-directed therapies, I started getting better and better outcomes. So this really was such convincing evidence to me that mast cells really are heavily involved in this initiation and maintenance of persistent pain.
[12:17] So we know that one possible way that mast cells initiate and maintain pain is through peripheral sensitization. When mast cells degranulate, that leads to the production of pro-inflammatory mediators. And some of these might sound familiar to you because they include things like serotonin, tumor necrosis factor, nerve growth factor, histamine, and tryptase. This results in the nociceptive neurons — or the pain-sensing neurons — releasing what are called vasoactive neuropeptides, and that leads to the recruitment of immune cells, including mast cells, and that leads to a positive feedback loop that leads to chronic pain.
[12:59] So the mast cells degranulate, and that leads to the production of these pro-inflammatory mediators. That results in the neurons — the pain-sensing neurons — releasing these vasoactive peptides, which causes the recruitment of more immune cells, including mast cells. So this positive feedback loop is one of the things that sensitizes the nervous system to pain.
[13:26] We also know that mast cells are probably involved in central sensitization. Mast cells degranulate in what's called first-order excitatory synapses, where the communication occurs between the neuronal and non-neuronal cells. These nociceptors release these inflammatory factors that activate the second-order neurons and non-neuronal cells, including mast cells. This induces neuronal activation via pro-inflammatory cytokines and chemokines, and this includes, again, tumor necrosis factor and interleukin-1b and a variety of other components. It also includes granular components like serotonin.
[14:07] So to answer your question, Jane, number one, the sharing piece is challenging, but a lot of us are trying to share more about mast cell activation syndrome. I believe that this question was posed before we released the first two newsletters on Substack, both of which did address mast cell activation syndrome. So Jane, if you're listening, I hope you enjoyed the first two episodes of the Substack newsletter. Please let me know if you found that helpful, because I do think that's going to be a really great way of sharing information with all of you.
[14:43] The next question I want to address is: can you share more tips on choosing a doctor? We've talked about this a little bit on previous episodes, but I want to discuss it again.
[14:54] So first, we want to consider the years in practice and experience. You want to consider the pros and cons here. And of course, I will be making some generalizations — remember that there are always exceptions to every rule. Younger doctors that are recently out of training have some definite advantages. They're going to have newer knowledge. They will have just recently been in a teaching institution where there are lots of people doing exciting research projects and they will have learned a lot of the really latest science. They're also possibly less jaded or biased because they have not been out in practice as long.
[15:37] At the same time, it's really important to remember that they have less clinical experience than older doctors. You learn a lot in school and you learn a lot in your residency. For anesthesiology, it's a total of 12 years of training post-high school: 4 years of college usually, 4 years of medical school, and 4 years of residency. And of course, you learn a lot over those years. But there's no substitute for years and years of seeing patients and being the one ultimately responsible.
[16:09] I will never forget the first time that I was left alone in an operating room during my residency. This is how you normally learn about doing anesthesiology. You spend time with different people who are already anesthesiologists, and they are teaching you various different things. You will have already done a lot of book reading and learning that way, but the very first time that somebody says, "Okay, I'm going to leave for 15 minutes and come back," and you're alone with this anesthetized, fully asleep patient on a ventilator with all the monitors — it is terrifying. At least for me, it was terrifying. It is very, very different when you are the one responsible as compared to when you're in your training and you have other people you can turn to. So you really need volume of patients and you need that experience.
[17:02] Doctors who have been practicing for longer — it can be very, very beneficial, especially if they're your surgeon. If they're your surgeon or your anesthesiologist, they likely will have had some complications, and maybe that will have helped them to be more cautious when it comes to patient selection. They're going to have a different perspective because they will have worked with a lot of different patients over the years. They also might have had their own medical problems, so they may be able to relate to you more easily.
[17:35] A potential downside, though, is they might be more jaded because maybe they've had some negative experiences with patients. And they also might not be as up to date as the younger doctors. I remember when I was realizing that I couldn't practice in the operating room anymore, I felt so sad because I felt like I was at the height of my career. I practiced for over 20 years, and over that period of time, I got better and better at really being able to anticipate when a patient was getting into trouble. So while you're doing a general anesthetic on somebody, you know, you're monitoring their heart rate and their blood pressure and all kinds of different vital signs, and you're increasing the gas or turning the gas down, you're giving more drugs, you're monitoring their breathing, etc. And over time, you get much better at being able to anticipate subtle, subtle changes. So doctors who have more years of experience might be beneficial for certain things, and younger doctors might be more beneficial for other things.
[18:38] The next question I want to address is: what if you are not having a great encounter, or are worried that you're not going to have a good encounter? So I have some suggestions.
[18:48] First, make small talk with the staff and find out how the day is going so you know what to expect. When you arrive at the clinic, you can start by talking to the person at the desk, and then you can talk to the person who puts you in the room. You can find out from them if they're having a particularly busy day, if there's been a lot of emergencies, or if things are running relatively smoothly. Some days are going to run more smoothly and your care team is going to be in a better mood, but other days they will not be. And these things kind of go hand in hand. I think it's helpful just to have a sense as to how things are going that day. If you're seeing someone that you see regularly, you might be able to tell, but if you're just doing a one-off appointment, you probably won't. So even before the appointment, ask people, "How is your day going?" If you show an interest in them, that's going to help turn things in a more positive direction.
[19:44] You want to give everyone the same benefit of the doubt that you want them to give you. So start out positive and friendly. It's okay to bring prior negative experiences into the appointment if it serves a purpose, and if you can do it in a friendly way and avoid blaming. So you could say something like, "If I appear nervous, it is because things didn't go well with my last doctor."
[20:08] When I first opened my practice, I didn't want to interrupt patients when they would tell me about their prior negative experiences. But I realize now that oftentimes we wasted a lot of time because they would spend so much time telling me about these prior negative experiences, and that also often led us to focus on the wrong things. So if you have had prior negative experiences — which you probably do; in fact, you probably have a lot of prior negative experiences — there is a time and place to have that kind of conversation, and I think that's really important. But your doctor is probably not the right person to talk to about this. And you also don't want to waste precious time during your visit having this conversation. But do find out who the appropriate person is to share your concerns and possibly have some kind of resolution.
[21:01] If you can go into your appointment feeling more optimistic and having realistic expectations and being considerate, you're more likely to get what you want. Because doctors know that patient satisfaction is very low and they will try harder if they think that they have a chance of pleasing you.
[21:21] But what if your doctor is distracted, distressed, or disinterested? If so, they are more likely to be dismissive. A couple things that you can do. One is you can let them know that you are not expecting a cure. A lot of times the reason why doctors are distracted, distressed, or disinterested is because they feel like the problem is too big for them to handle. You can let them know what the one thing is that is most important for you to come out of that appointment with. So for example, it might be that you really want a referral to a specific specialist. Or maybe there's a single lab test that is really important to you. Or maybe you need them to listen and validate your concerns. Let them know that that's the thing that you really want to get out of the appointment.
[22:15] If needed, you can ask them, "I think maybe we got off to a bad start. Can we start over?" Also, you can let them know that this appointment really means a lot to you and that you really need their help. Of course, there are different ways that you can say this. Tone of voice matters a lot. Your nonverbal body language means a lot. So if you have your arms crossed, that's going to convey a very different tone than if you have your hands more open and if you're leaning forward.
[22:40] If you can change the tone of the session, that's great. But if not, and if they're really having a bad day, then maybe you want to give them another chance. If you're not able to change the tone of that conversation and you feel like, "No, this is a pretty typical day," then you might want to find someone else if you can. One patient who is a healthcare professional told me, "You have to read the room." And I think that is a good way of looking at it. I would also say, "He's just not that into you." I don't remember what movie that's from, but I think it's really important to get a sense of how interested the doctor is in helping you.
[23:24] Also, if you have a PCP and they're discharging you because you are complex, let them know that you're not choosing to be complex. If you are being discharged from the practice, ask them why and ask them to write it in your note. Maybe it's because they have nothing to offer. Maybe it's because you're too complex. If it's because you challenge them, they're probably not going to put that in the note. But at least if you have something in writing, that might be helpful for when you try to get the next doctor.
I know there are a number of you that have been discharged from multiple practices, and it can be really hard to find a doctor to help you. So that's why I'm suggesting that if you can, get it in writing and really find out the reason why, because that will help you be able to choose somebody to help you in the future that's hopefully going to be a better fit.
[26:23] The next question I want to address is: how can I describe my symptoms in a way that my doctor will take me seriously?
[26:30] First, I want to point out that you might be describing things to your doctor that they have never experienced and they probably also have never heard about in school. So one example: if you have severe fatigue and post-exertional malaise, this is something that your doctor has maybe never experienced except for when they've had the flu. You might want to try to relate that to an experience that they have had, like if they've had the flu, because otherwise they might not know what this feels like. You might want to remind them how exhausted they likely were and how any exertion made them feel worse. And you could share with them that this is how you feel on a regular basis, if that's the case.
[27:12] What can often be challenging is that your doctor might be comparing you against the sickest case they have ever seen of whatever the condition is that you think you might have and are seeking a diagnosis for. So let's say, for example, you suspect that you might have upper cervical instability and you are seeing a doctor who even knows what that is in the first place, or understands that it can happen from a medical condition and not just from a car accident. So let's say you're seeing a doctor and you're concerned that you have upper cervical instability, and you start talking to them about it. In their mind, they might be thinking of the worst case they've ever seen of upper cervical instability, or they might be thinking of something that they read about upper cervical instability that was an extreme example. The same thing goes for whether it's CSF leak, tethered cord syndrome, ME/CFS, etc.
[28:09] If they do treat patients with hypermobile EDS, hopefully they have seen a wide spectrum of patients with hypermobile EDS, so they know that some patients are pretty highly functional and have mild symptoms, but other patients are extremely debilitated and are having multi-systemic symptoms. It's really hard to understand symptoms that you have not experienced.
[28:33] If you can recall a period that you did not have these symptoms, you can compare yourself then to how you are now. It might even help to bring a photo. You could bring a couple of photos. Of course, they're going to see how you are now, but you could bring a before and after photo. This has been really helpful for me with some of my patients who previously had been athletes or extremely active people. I've had some people share with me pictures of them hiking, climbing, doing some very intense activities, which really helps me to understand where they're at and why it's so difficult to be dealing with these symptoms.
[29:13] Let them know that you will do anything that is in your power to try to get as close as you can to where you were before. It might not be realistic to get back to being that really super physically active person if you were an athlete or a climber or something like that. But let them know that you really want to improve your functional capacity as much as possible.
[29:38] I know one of the things that people get really frustrated over is the prescription to "exercise." Oftentimes people are given the advice to exercise without being given the specifics about how to do that. And a lot of people have tried exercise, but instead of making them feel more energized, it makes them feel worse. Let them know that you have tried exercising and that you need some tips for how to start moving more without making you feel worse. Hopefully, they will be able to direct you to some resources that will be helpful for you.
[30:15] Again, remember, we are taught and shown extreme examples in medical school. So it is very important to remind the doctor that while it might not seem as significant to them, it's really significant to you — and definitely describe how these symptoms are affecting you. You want to describe your symptoms as factually, clearly, and quickly as possible, and don't put in unnecessary details. As they say in journalism, you don't want to bury the lead.
[30:48] It is not uncommon for people at their first appointment with me to share tons and tons of information, and it can be like trying to find a needle in a haystack. So while we need lots of information, it can be very, very helpful to have that information organized. Now, you might need to have somebody help you with this because I know a lot of people have brain fog and other limitations. But sometimes we're not ignoring your symptoms — we're lost in a list that is too long or includes what we feel are irrelevant details.
[31:22] You might want to practice describing your symptoms to your friends or your family in short sentences, maybe 2 or 3 minutes maximum, and definitely talk about why you are concerned and how this affects you. You can always start with less information but have more information readily available.
[31:41] So what I like is for people to have a one-sheet — one page that contains the most critical information. If you had a really, really limited period of time, the most critical information would be on that one sheet. And I'm going to liken this to when I would be doing an emergency cesarean section. It was not uncommon — either an emergency cesarean section or somebody coming up from the cath lab that was crashing — where from the time you knew that you were going to be anesthetizing this person to the time that you're putting them to sleep is a matter of maybe 5 minutes. So you have a room usually set up to do these emergency cases, so that part is taken care of. But you race over to the area where this person is, whether it's the OB suite or the cath lab, and literally as you're walking with the staff who have the person on a gurney — while you're walking from the cath lab or the OB suite to the operating room — you're asking them the most critical questions.
[32:42] You're looking at the airway because you want to know what the airway looks like, assuming that they're not already intubated. So you have them open their mouth, you look in their throat, and you make sure that you're not going to run into any difficulty putting in the breathing tube. And then you also want to know their allergies, because that's obviously crucially important information. And then you also want to know if they have a history of malignant hyperthermia, which is a condition where people get high fevers during anesthesia. Those are the 3 critical things that you ask. If you have time, you also want to find out about their medical problems, but in these kinds of situations, you usually don't have that luxury.
[33:23] So I want you to think about your medical appointments in the same way. Even though it's not a crisis situation like that, you probably only have maybe 5, 7, 10 minutes with your doctor. Even if you have a longer period of time — let's say you have an hour with your doctor — that's still a lot to cover in an hour because you likely have had problems for many, many years.
[33:46] So I suggest that people have a timeline: a bullet-point timeline that starts with the mom's pregnancy and if there were any problems with the delivery, and then goes into childhood, elementary school, high school, college if you attended, and then your 20s, your 30s, 40s, depending on how old you are. But have everything in bullet points and keep it succinct. That's one document you want to have. Only pull out that document if it's asked for — don't immediately start with the timeline document.
[34:23] The other document you want to have is a bullet-point list of symptoms, ideally organized by different systems in the body. So you could have musculoskeletal things grouped together — that category of musculoskeletal — and then you could have a bullet point for shoulder pain and shoulder subluxation, or a bullet point for knee pain and dislocation of the patella. Each thing just gets one bullet point. You can always elaborate and add more information, but start with having these documents that contain the really short, essential information.
[35:05] It's kind of like if you're writing a tweet. You usually start with something longer and then get it down shorter and shorter. If you start with these other documents, it makes it easier to create your one-page one-sheet. So you want to have the bullet-point list of your timeline, you want to have the bullet-point list of your symptoms, and then using those, you can also create the one sheet that has your medical problems, your past surgeries, your medications, your allergies, and things like that.
[35:39] Now you might think, there's no way I can fit all that on one page. Again, try to think of it like a tweet — try to get rid of the least important things and keep the absolute most important things. You can probably condense certain things. So for example, if you have allergies to multiple different antibiotics, for the purpose of the one sheet, you can say "allergy to multiple antibiotics." There's going to be other places where you will put in the specific antibiotics that you're allergic to, but for the purposes of the one sheet, try to condense. Similarly, if you have a lot of environmental allergies, you could say "multiple environmental allergies." Keep that one sheet very succinct and very clear, and you can use boxes to try to delineate the different areas. It's actually pretty amazing how much you can fit on one piece of paper.
[36:40] I think it's very helpful to have this because then you can bring it into any appointment. You can update it periodically as information changes. And this is also the kind of information that they want in an emergency. So let's say that you do have a medical crisis and the paramedics come to your home. On that one sheet or in an app on your phone, you could have the most critically important information: your allergies, your most critically important medical problems, and any medications that they should know about. If you're taking insulin, they definitely want to know about that. If you're taking low-dose naltrexone, it's important for them to know about that as well.
[37:22] You also want to have a binder, and in your binder you will have the ability to find tests or other things that they want. So you should have a section of all of your imaging results — whether it's a chest X-ray, MRI of the knee, MRI of the back, etc. Ideally, you don't inundate the person with all of that information up front, but you have it in a binder that you bring to the appointment. So if they ask, "What did that MRI of the brain show?" you can then pull it out and show them. Now, I understand that this might be very challenging, so you might need to have someone in your family help you with this project.
[38:01] You could also practice your description of your symptoms with your family and friends. Make sure to describe why you are concerned and how this affects you. And get feedback from your family and friends — ask them what they thought about how you described your symptoms, and ask them for feedback on your one sheet and your binder and your timeline and your symptoms documents.
Next, I want to talk about how we are taught to think about symptoms. You can think about this in a who, what, where, and when format. So for example, you want to have the answers to these questions: Where is the problem? Does it stay in one place or does it move? When did it start? How long does it last? How often does it happen? Is it changing — has it been getting worse or better, or is it about the same? How severe is the symptom? What makes it better? And what makes it worse?
[38:59] If you think ahead of time about the answers to those questions and write the answers down, that will save a lot of time in the appointment. When you are writing down that bullet-point list of symptoms by system, that is not the place to put the answers to these questions — that document is just going to be more of a list. But you can take another piece of paper and write down the answers to these questions for the most important 2 to 3 symptoms that you want to discuss.
[39:35] I would definitely write these answers down ahead of time so that you don't have to sit there hemming and hawing trying to figure it out, because some of these questions are hard to answer. I know for me, when I go to the doctor, sometimes it's hard to say how often something happens because we're trying to go on with our life and trying not to pay attention — but it's important for them to know.
[39:57] Okay, another important thing that you can do with your symptoms is check out some reliable websites to learn about possible explanations. Now you don't want to lead with this, but you want to have that information available because you could say, "Could it be this?" I strongly recommend that people do not label their symptoms — that they go in reporting their symptoms as objectively as possible, very succinctly, very directly. But if you have been able to do some research using reliable websites, and if your doctor is kind of struggling to come up with an explanation, then you could say, "I've done some research. Could I tell you what I think it might be?" I think that is a better approach than coming in saying, "I think I have blank," because then it's a lot harder for them to think about your symptoms in a more objective way, and you don't want them to miss anything. When you start out by labeling your symptoms, it can lead us down a path that may or may not be the right one.
[41:04] Some websites that you might want to check out include NIH, CDC, WebMD, major teaching centers, and there are a lot of nonprofits that have really excellent websites with helpful information.
[41:17] So when you are approaching your medical appointments, it's really important to have an attitude that is friendly and positive. You want your doctor to feel like they do have a chance of helping you. I've heard this from colleagues of mine and I've had this happen to me — there are times where a person has had so many prior negative experiences that they go into an appointment with a brand new doctor already kind of judging them. And we don't want the doctor to judge us, so it's important to not judge the doctor prematurely. You want to go into that appointment with an open mind and demonstrate a willingness to receive the information. You want to demonstrate that you are wanting to work as a team, and I think that's more likely to then have them want to help you as a member of your team.
[42:12] One of the best things you can do as a patient is to have realistic expectations. If you have realistic expectations — for example, you go into your appointment and you have one goal, maybe you want a referral or something like that, and the doctor is able to give you that — then they're more likely to want to help you in the future because they know that they can give you what it is that you want. Even if it means coming back for another appointment a few weeks later. Let them know that you have realistic expectations, that you know that they're not going to cure you in the first appointment or the second appointment or probably ever. Let them know that they can win and that they can help you, and they will be so much more likely to try to help you.
[42:59] Okay, let's move on to our hypermobility hack for this episode. I want to address questions to ask your doctor. This is from the Society to Improve Diagnosis in Medicine, and we will have a link in the show notes. These are things that you want to ask your doctor in particular at the end of a session.
[43:19] "What is my diagnosis, and what else could it be?" I can't tell you how often people talk to me and they don't actually know what their diagnosis was. Make sure that you know what your diagnosis is. It may or may not be the same thing as the ICD-10 diagnosis that they're putting on your paperwork for insurance, because oftentimes those are more general and we might not put something as specific on the paperwork for insurance purposes. So ask, "What is my diagnosis?" When you are asking, "What else could it be?" you are asking them to expand on the differential diagnosis. We're taught in medicine to think about the most likely diagnosis and then something called the differential diagnosis — the other things that are most similar or present most similarly to that condition.
[44:20] Next, you can ask, "Why do you think this is my diagnosis? Is it from test results? Is it from my physical exam?" I think this would be very helpful for you to understand why it is that they're arriving at that diagnosis.
[44:33] "Can you give me written information on my diagnosis?" A pamphlet, a website, a nonprofit organization, a podcast — something where I can get more information in a written format, in a verbal format, something that will help me understand my diagnosis.
[44:52] "Can you explain the test or treatment you want me to have? What are the risks?" It's often surprising to me that people are not informed enough about possible risks for various different treatments and tests. Some tests, like a plain chest X-ray or plain X-ray of the hip, really don't have any risk. But if you're having an MRI with dye, then you have the risks of the dye, which can be quite significant. Even if you don't have an immediate reaction, there is a thing called gadolinium toxicity, which is definitely understudied. So even with gadolinium — one of the newer, safer contrast dyes — there are still potential risks. So you want to ask about the risks, and you want to ask, "What happens if I do nothing?" That's really important, because you want to understand the risks and the benefits of the test or treatment that they're recommending.
[45:52] Also ask, "When do I need to follow up with you? And what should I do if my symptoms worsen or change, or I don't respond to treatment?" So these are some things that I suggest you ask at the end of your appointment. Make sure you go into your appointment with a list of questions to ask during the appointment as well, and let them know that you have some questions you want to ask at the end. Hopefully they will allow a little bit of time to address these questions. Of course, you can skip some of these if they're addressed during the appointment.
[46:23] All right, well, that's it for today. I hope you found this helpful, and I want to thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast. You can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions.
[46:42] If you would like to dig deeper, you can meet with me one-on-one. Please check out the available options on the services page of my website at hypermobilitymd.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn at HypermobilityMD. You can find Human Content, my producing team, @humancontentpods on TikTok and Instagram. You can also find full video episodes up every week on YouTube at Bendy Bodies Podcast. To learn about the Bendy Bodies Program disclaimer and ethics policy, submission verification and licensing terms, and HIPAA release terms, or to reach out with any questions, please visit bendybodiespodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.